What's New In Jacob's World?

Welcome to Jacob Irish's Web Page. Jacob was diagnosed with MPS1 - Hurler Syndrome in December 2001 and underwent an unrelated umbilical cord blood transplant at Duke University Hospital in May 2002 as treatment for his disease. He has had several other surgeries due to his disease including VP shunt, tonsil & adnoid removal, multiple PE tubes, hernia repair, carpal tunnel release, posterior spinal fusion, bilateral knee stapling, c-spine decompression and fusion, & bilateral hip osteotomy. Jacob is a remarkably happy 10 year old who doesn't allow any of his medical issues to cause him any problems. Please feel free to sign Jacob's guestbook...we'd love to hear from you!

"Every blade of grass has its Angel that bends over it and whispers, "Grow, grow."

~The Talmud

Journal

Wednesday, October 12, 2011 9:40 AM CDT

The good news is that Jake is doing great! Guess that’s why Grandma Cindy has failed to post anything in so long. Sorry! In fact, some of you may have been wondering about Jacob’s pain that began on Thanksgiving Day last year. Well, why we may never know for sure because Jake remains a mystery, Jacob had several teeth pulled in April and he has not experienced the pain since thankfully. All good news!

On July 29th Jacob turned 11 years old; quite a milestone considering his initial diagnosis. He is big brother to Matthew, who is now 10, and Noah, 5 years old. Jacob still refers to Noah as “baby” which doesn’t seem to bother Noah much…yet.

Jacob started at a new school this year, Cougar Creek Elementary. Melanie was hoping to have all 3 boys in the same school for one year as Noah started Kindergarten at Lakewood Elementary in September and Matt is in 5th Grade there, but after much research, soul searching, and angst, Melanie and Steve made the decision that the program at Cougar Creek would best meet Jake’s needs. There was some initial concern about how Jacob would adjust, but being the trouper he is, he seems to be doing fine while Melanie keeps a close eye on his new environment.

On the medical front, following his last leg break, the recommendation was made to have Jake receive IV Pamidronate for his bone density and hopefully prevent his bones from breaking so easily. He has had one infusion so far and it went as well as you might expect considering it takes up most of a day at Seattle Children’s. He will receive the infusions once a quarter for the time being and they will continue to monitor his bone density to determine the impact.

Oh, and if you want to hear a real belly laugh from Jacob, get down on the floor and play “Duck Duck Goose” with him. It is his absolute favorite game and we all believe he would play it non-stop if he could convince everyone around him to play along!

Matt and Noah are both playing soccer right now which keeps the family on the road. What with games and practices they put lots of miles on the car.

Guess that’s the news for now! Stayed tuned as we never know what Jacob (and life) may throw our way! Until then….

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E-mail Author: melirish@wavecable.com

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